Skin cancer and CLL – a two front war you do not want to fight
That is the succinct message I have repeated dozens of times on this website. It is now well documented that the single most common second cancer in CLL patients is skin cancer. The little patch of actinic keratosis (pre-cancerous lesion) and basal / squamous cell carcinomas that are dismissed as relatively unimportant can become life threatening monsters in CLL patients – unless you pay attention and take care of the problem right away.
The first line of defense is avoidance. Avoid skin damage by excessive exposure to UV radiation. That means long sleeved shirts, long pants and a hat, if you are going to be out for any length of time. Remember, just because it is cloudy does not mean there is no UV sleeting down. Lack of sun exposure may mean vitamin D3 (“cholecalceferol”) deficiency. Fortunately, it is easy enough to get tested for your level of this important vitamin and correct any insufficiency with oral capsules. Please search for “vitamin D3” and “BCC” to find all the other articles we have on these important topics.
Sometimes sun damage that happened way back in your mis-spent youth may come back to haunt you, especially if you have the skin type that burns easily. Avoidance is no longer a choice, that train has already left the station. The second line of defense is getting early warning. That means full body skin examination from a well trained and qualified dermatological oncologist. You do not want to get stuck with the guy who makes a specialty of curing zits in teenagers, or Botox injections for the anxious middle aged among us. Or someone who does not understand the implication of your CLL – less than robust immune system – and its impact on your body’s ability to make short work of tiny skin cancer spots that healthy people can take care of with one arm tied behind their backs.
The third line of defense is offense. It may not be sufficient to just freeze off the tiny skin lesions. Moh’s surgery to remove basal cell or squamous cell carcinomas are simple affairs in otherwise healthy people. Not so in the case of CLL patients. Mohn’s surgery needs to be done with larger safety margins (bigger piece of your hide removed) in order to improve odds of the cancer not recurring at the same location. People, vanity is all very well, but please do not second guess your surgeon when he says he needs to take a big bite out of your balding scalp or the tip of your nose. On the contrary, be sure to ask him whether he is being prudent enough, taking out enough margin around the BCC to increase your odds of avoiding recurrence, given your history of CLL.
Surgery is not always enough and I have seen too many cases where the skin cancer recurs at the same location. There has been a real need for better drug options to add as a backstop to the Moh’s surgery. Far too often, the neglected or under-treated little basal cell carcinoma takes center stage, overtaking CLL in its impact on both quality of life and duration of life.
A much needed new drug
That is why I am pleased to hear about the FDA approval of vismodegib (trade name “Erivedge”) from Roche. This is a new addition to the stable of “smart drugs”, targeting what is whimsically called the hedgehog pathway, a signaling pathway that is important in the spread of basal cell carcinoma. Is it completely safe and without side effects? You want to take a guess at the answer?
No, it is not entirely without a risk profile. If you are pregnant or breast feeding, forget about using it. It has very serious risk of birth defects. Fortunately, for the majority of our patients this is not an issue of concern, since we are more likely to be looking at welcoming grand-kids into this world than having kids of our own. Sure, there are exceptions. If you are pregnant or planning to get pregnant, don’e use this drug. Period. The rest of the adverse effects (listed in the press release below) are not much fun either. But they sure beat the alternative: fighting a two front war with CLL and aggressive skin cancer. That is a fight I would not wish on my worst enemy.
FDA approves Roche skin cancer drug Erivedge
(AP) NEW YORK — Federal regulators on Monday approved a pill that treats the most common type of skin cancer, basal cell carcinoma.
The pill is called Erivedge and is made by Genentech, a unit of Swiss drugmaker Roche. Erivedge is intended to treat locally advanced cancer for patients who are not candidates for surgery or radiation, and for patients whose cancer has spread to other parts of the body. The capsule is taken once per day.
Genentech said Erivedge is the first drug approved to treat advanced basal cell carcinoma. It said the drug will be available within one to two weeks.
The drug’s label will warn that it is linked to fetal death and severe birth defects when it is used by pregnant women. The most common side effects of Erivedge include muscle spasms, hair loss, weight loss, diarrhea, fatigue, changes or loss in sense of taste, decreased appetite, constipation, and vomiting.
Curis Inc. of Lexington, Mass., which collaborated with Genentech on the drug, is getting a $10 million payment from Genentech now that the drug has been approved.
The approval comes ahead of schedule, as the Food and Drug Administration previously said it would make a decision on Erivedge by March 8. The drug was given a fast six-month review because there are no approved treatments for basal cell carcinoma.
What do we know about the drug thus far? In a phase II clinical trial of using this drug to treat basal cell carcinoma (two cohorts, one aggressive BCC and the other metastatic BCC – total of 104 patients), Erivedge demonstrated it can shrink tumors or heal visible lesions in 43% of the patients with locally advanced BCC and in 30% of patients with metastatic (fancy word meaning the cancer has spread to other parts of the body) BCC. Median progression free survival for both groups was 9.5 months. You may not think those results do not sound too peachy. Trust me, it is a huge improvement over what we had going up to now in such advanced cases – especially with CLL thrown into the mix. Based on this encouraging data, Roche decided to up the ante and asked the FDA for an early decision, even though the data was based only on a phase -II trial. The all important FDA approval came well ahead of the company’s expected decision deadline. I have no doubt this drug will be commercially available for prescription within short order. I will keep an eye out for any additional information on it and report back to you.
Site News
I have had to pre-pone my trip back from India to the USA. My beloved dog Jasper is very ill and in this serious emergency I am pulling out all the stops to get back home ASAP to be with her. I am heading out of here tomorrow. Please note I will be out of email reach for the next few days due to the travel, followed by downtime to take care of jet lag. In other words, don’t get upset if I don’t respond to your emails with my usual promptness. Sometimes life intrudes and prevents us from taking care of stuff.
Postscript
I am back home in the US – exhausted and heart-broken. Jasper passed away before I got here. I got the news a few hours before I boarded the flight in India.
She was my best friend, my muse, my precious connection to the life I lived with my husband. I am reeling with grief and loss. In less than a week she went from perfectly fine through diagnosis of metastatic lung cancer, blindness, respiratory distress and death. I am devastated that with my best efforts I could not make it back in time to say goodbye to her. Pete gave her a loving and gentle send off, for which I will always be grateful. She went away, as she listened to Pete telling her how much she was loved, that mommy was coming back soon, and Papa is waiting to go on hikes with her again. She could not see Pete, but she could hear him and smell him. She gave him several gentle licks on his hand and died peacefully. RIP, sweet Pup. You gave much joy to our family and friends who got to know you.
29 comments on "Erivedge: Brand new FDA approved drug for aggressive basal cell carcinoma"
Prayers to you and your Jasper…these furkids of ours are such a part of us !
When I read CLL & SKIN CANCER I about let out a big WHOOPEEE !
Jack has had skin cancers removed. The first on his forehead (basal cell) the second on his arm ( squshnoma )
When we told the dermatolgist about his CLL…the doctor turned to the computer and did a GOOGLE on CLL/SKIN CANCER ….yikes…He didn’t know there were higher risk factors !
Just now, in looking at the photo with the man and nose…thought was looking at Jack ! He has a deep indention on nose and dr. says nothing to worry about. They did a small scrap. This spot seems to be getting “deeper”
Since we are patients of Dr.Keating at M.D.Anderson, we want to find someone there who will know about the CLL/SKIN CANCER issues…before your article, we were wondering if this is the right thing to do.
YOU have helped to make up our minds….YES!
Bless your heart for all you do for us CLLer’s….
I sent you a lengthy email about our issues with CLL and the local doctors….Sent the same to Shirley Huang, who helped us when we frist started paying attention to our CLL…through Shirley we found you…
Judy and Jack Knudsen
Red Oak II
Missouri
judyandjack:
Responding to your email- one of the many strengths of a full service cancer center like M. D. Anderson is that they have oncologists specializing in all types of cancers as well as cancer related complications – infections for example. Your CLL expert would be the one to refer you to other specialists on an as needed basis. It is kind of hard to self-refer yourself to the various specialists. Dr. Keating is well connected with all the other folks at MDA and I am sure he will get you set up with other experts Jack needs to see. He may also be able to recommend local specialists that you might want to use in between visits to MDA.
What you need to do is get yourself organized so that you have all your questions and issues nicely laid out, to maximize the limited time you have with Dr. Keating. With all the expertise and good will in the world, it is very hard for physicians to keep all the nuances of each patient at the tip of their fingers. That is where a well organized patient has the advantage over the clueless variety. Best wishes to you both.
Difficult to travel with thoughts of Jasper on your mind. Hope the journey is easy and he’s well enough to give you a great welcome when you get back. Your constant vigilance on our behalf is amazing. Thank you so much. X
Thanks for the reminder re CLL and skin cancer Chaya. Because you flagged this up before, I noticed a patch of skin on my cheek changed to darker and more dried out after even a few minutes in the sun last year. As you had made me vigilant, I immediately took heed and went inside. Using a moisturiser on the patch seemed to help and it went away again. Thanks to you, I now see the sun as enemy No 1 and always cover up.
Good health to Jasper and you on your journey.
Prayers for Jasper.
So sorry to hear about Jasper. He’ll be so glad to have you to comfort him.
chaya,
Deeply moved by the news of Jasper. I wish strength for as you care for him, a full recovery for him and comfort for both of you. we’re all rooting for you both. Beth
I too will provide Prayers for Jasper. Dogs are so important. I know my dogs are so special. My husband is having Mohs surgery today so very timely article even though he does not have CLL. I do. Namaste
Jasper is a cutie. Thank you Chaya. I am thinking of you both.
Great article. Prayers to you for a safe journey home and for improved health for Jasper.
Right on target again! Although I have never had any serious skin problems Frank and I both see our dermatologist 2x yearly. Frank (who worked on the railroad in the Arizona summers between college semesters) used to find his own nearly-invisible carcinomas so we switched to a much better doctor downtown 8 years ago. The doctor can make a huge difference in your life.
He had MOHs twice on his nose and then PREVENTATIVE blue-light therapy which has made a huge difference. It was done twice over his entire head and parts of his face. Now, much better visits and no carcinomas in over 2 years.
Wishing you safe travel home and good news when you get there. I took a deep breath when I saw the photo… Jasper is the spitting image of our Porter, same tri and nearly identical markings. So very precious and dear they are.
Chaya- Best of luck with Jasper. Cleo, Victoria and I are rooting for both of you.
I had a basal cell carcinoma removed a few months ago. Fortunately it has not spread…
Best regards,
Malcolm
A very beautiful dog. best wishes and luck
Chaya,
Thinking of you as you travel and Jasper as he awaits your homecoming.
Namaste’
Chaya,
All my hopes and thoughts are with you for a good reunion with Jaspar, and a recovery for whatever is ailing him.
Heléne
Chaya,
My thoughts and prayers are with you and Jasper.
Rita
Jasper is a beautiful dog and she deserves to have her “mom” home when she is feeling down. We bet she has done the same for you when you have been sick or discouraged. Our pets can be special friends and allies in times of stress and we should be the same for them. We hope you find her feeling better, tail wagging, to greet you when you reach home. If she is not yet better, she will surely feel better when she sees you come thru the door.
Thank you for all you do to help us in the CLL community.
Roger and Nancy
Just saw this post and I’m so very sorry that Jasper is having a tough time. All the best to her and to Chaya.
Lynn S.
Thank you for this article.
Sorry to hear about your loved dog. Have a safe trip. Your friend wait you.All the best to Jasper and to Chaya.
So Sorry to know about Jasper. I havent check that she passed away.
I can understand your loss.Jasper was lucky to be loved by you and your family. Remember the good days with her. I am with you at this moment.
You grow to love your dog, I feel for you.
Be well, Mette
Oh Chaya .. my heart reaches out and I share your tears. So very sorry for your loss.
Chaya,
I know this is such a very sad time for you. Having just lost our 13 year old Kelly, I can certainly relate to your deep feelings of loss of your special Jasper. My thoughts are with you, Radha and Pete.
Jean
Chaya,
Sorry for your loss and grief. May the days ahead be filled with the joy of remembrance of unquestioned love and devotion.
Be well,
js.
Dearest Chaya:
We are sending big hugs to you as you grieve the loss of Jasper. We loved meeting her – she was a sweetie for sure. We have no doubt that she and PC have reunited. I know you feel another void now – her presence was a comfort and a connection with PC. Just remember that PC lives through all of your family in this community. We are all share a thread. Be gentle with yourself as you adjust: be in nature, eat your favorite foods, and only watch uplifting movies.
Much love,
Barb & Blair
Dear Chaya –
I am so sorry to hear about the loss of your beloved dog Jasper.
I have had wonderful dog companions most all my life, so I know how much a part of the family they become. They bring so much joy and laughter into our lives. I consider my dogs “furry angels” and I know they leave permanent paw prints all over our hearts.
This must be especially difficult for you since Jasper was a connection to PC.
Bless you dear Chaya. Please know that all of us that are part of your CLL family will keep you close to our hearts (and in our thoughts and prayers).
Warm regards – Patti
So Sorry to hear about Jasper. I have 3 dogs and I love them all so much. This cycle of life is so sad but it sounds as though Pete told her the things she needed to hear and she was not alone. Jasper knew love from you. Having the love a dog in your life is so great and giving them love is also great. They certainly are man’s best friend. Always there, always forgiving and always there to love. Namaste
Dear Chaya, I remember Jasper so well, one of the smartest dogs I have ever seen. The love and companionship between the three of you was something very special. This is so hard, and my heart goes out to you. Beth
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